We are honoured to be working with The Children's Wish Foundation of Canada to help make wishes come true for two very deserving families. One of these children is Nolin, who has asked for a Swim Spa to help him with his daily aquatic therapy. Read Noin's story below.
Nolin was born with a very rare genetic disease called NAN's deficiency, a condition where a missing enzyme affects bodily processes. He is the first person in the world to be diagnosed with this missing enzyme that so drastically affects his life.
Nolin is now 4.5 years old. His condition is characterized by extremely low muscle tone, which means that he cannot walk, talk, sit unsupported, or eat on his own. Nolin is completely dependent on caregivers and his parents. He has seizures that can't be controlled with medication, a life threatening blood disorder, heart issues, soft larynx, low motility of the digestive tract, and a bone disorder. His bones are soft and similar to cartilage, and he will need multiple surgeries for his dislocated hips and his curved/twisted spine. These surgeries can be extremely challenging as his heart, blood disorder, and weakness in the body means that recovering from surgery is complicated.
Nolin’s orthopedic surgeon recommends daily aquatic therapy, but due to his low immune system and his many complexities, he cannot spend time in public places, so public pools and therapy centres where other children may receive this treatment are off limits. Nolin’s parents, Darlene and Frank, are hopeful that a therapeutic pool at home will help with Nolin's health and quality of life by allowing him to exercise his muscles and increase his strength.
As the world’s first NANS diagnosis, it is difficult for the family to know what the future holds, and they have dedicated their lives to ensuring Nolin is as comfortable as possible. Research related to Nolin’s condition out of BC Children’s Hospital has led to other confirmed diagnosis around the world. This has saved other families from endless expensive tests and given them hope for treatment options. At this time, a treatment for a cure is unknown.
In spite of his daily challenges, Nolin is a happy little boy full of wonder. He loves other children, and his family’s home is filled with his laughter, especially when they have visitors!
